First of all I would like to say that I have been reading your questions and blogs since I have diagnosed with stage 3C OC or PPC in October and what a knowledgable, supportive and inspirational group you are. I have drawn great comfort from your stories and advice.
I have had 3 chemos and am feeling a lot better. I had a scan a couple of weeks ago and am pencilled in for surgery as the cancer has reduced. Because of the season I can't see the surgeon for a couple of weeks, so he will book in the surgery and then arrange to see me, probably quite a short time beforehand.
While I think being able to have the surgery is a good thing, I hate operations and am trying not to listen to my inner 2 year old, who is having a tantrum!. I have so many questions and it is driving me mad that I can't ask them. I have spoken to the specialist nurses, who are great, but they don't know either and won't until the actual op for some of them.
I had bowel involvement before so they are involving a colo-rectal team, but don't know whether they will be needed.
The main thing I would like to ask you is your experiences of surgery. How were you afterwards? How long did it take to recover? When could you drive? What about sex? (No-one seems to want to talk about that!) What should I be asking? Also, why is it a good idea to have this operation?
I realise we are all different and no 2 cancers are the same, but information is power.
Thanks so much. You may stop or at least delay my nervous breakdown!
Written by
SueLR
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Immediately afterwards - I had a huge wound and metal staples and went home after 3 days, and was ill for about a week to 10 days - then my GP told me to stop the diclofenac, and I stopped feeling permanently sick, and started to mend.
How long did it take to recover?
Fully?About 18 months, but I had 6 months of chemo after my op.
When could you drive? After a month or so.
What about sex? I wasn't very interested, and was very dry and irritated so needed a lubricated gel (which my GP provided on prescription).
What should I be asking? You will be told exactly what they will do and what might go wrong (too much information, frankly) I said 'just do whatever you need to when you can see what's needed', but that wasn't possible because I had to give 'informed' consent (as if all the information in the world can inform you when you're petrified about having cancer!). Take someone with you to see the surgeon - you will need th em to help you to remember what was said.
Why is it a good idea to have this operation?
Because if you don't the tumours are more likely to spread into your lymph nodes and anywhere else they can get to. I suppose it's feasible that chemo might kill the cancer off on its own, but I personally just wanted it taken away.
Don't have a nervous breakdown. It really is survivable, and make yourself a comfortable nest at home - get out of hospital as soon as you can bully them into letting you go, and look forward to listening to the radio, watching tv, reading, knitting, sewing, writing - or whatever you enjoy, and let the winter blow itself out whilst you recover. Then life gets better and better!
Have a little exercise each day, and eat well.
Best wishes,
Isadora.
PS. They feared bowel involvement for me too, and I was terrified - but lucky!
Don't restrain your inner two year old too much - she's just trying to get something done - give her a cuddle!
Hi Sue as one of the support line nurses it is important to remember that we are all different and some people will recover more quickly than others but many people are surprised at how soon they are back on their feet.
However you will need to be careful about lifting things and taking it easy at home but the hospital should be able to give you exact guidelines about this. Make the most of taking it easy! There is a good fact sheet on the Macmillan website about hysterectomy for cancer. Check with your not only your doctor but also your insurance company about when they are happy for you to drive. Doctors usually want you to heal properly before having sex ( usually 6 weeks) but check with the hospital as this can vary.
The operation is carried out so that as much cancer as possible can be removed and you can have the best possible outcome from your treatment. If you want to discusss things further do give us a ring
Hi Sue, had my first op April 2010 radical hysterectomy with omentom removed was out of hospital on day 5 , no lifting for about 6 weeks to be honest it wasn't as bad as I thought and felt well when I got home just tired. My 2nd op was June 2011 as I had a re-occurrence this op was worse as they also repaired a large hernia,and I had a couple of drains but again was home on 5th day and take things easy for 6 weeks, my nurses were winderful youonky had to say you had pain and there they were with medication just said if I felt sick and hey presto wonder injection. So try not to worry too much they are all there to help you and you will soon be home. Good luck and let us know how you get on. Love Sue x
Like you was diagnosed last year with OC stage 3, I was told I would have 6 sessions of paclotaxel/carboplatin with scan mid way. The scan showed that the tumours were shrinking and that surgery would be performed, I understood that i would be left with quite a large scar, this was disapointing as I had had a hysterectomy (ovaries left in)15 years ago by key hole surgery. Anyway, during surgeryon 5th Sept last year they discovered that my ovaries were normal and that it was PPC I had, this news was good news I was told. Just shows that even with all the scans, they didnt really know what was going on inside, I was in hospital for 3 days after surgery. The surgeon used a new technique and I only have a 9cm scar, running down across my belly button, I had 14 metal staples which were very easy to remove and recovered well. I did not drive for around 6 weeks and continued with my last 3 sessions of chemo and got the all clear last Nov. (Wore a bikini when we went to Lanzarote last xmas) Life kicked in after the new year and I was back at work doing my normal duties. My unwanted lodger has returned and I will be having my last chemo of second cycle on the 29th Dec but I am determined that this will be the last.
The secret is to stay positive (easier said than done I know) take the time out to relax and recover, listen to your body and dont feel bad if you just feel like having a "duvet day". I let my inner two year olds tantrum run its course then told it "no more" Is there a cancer support group or centre near you, I enjoy the support and complementary therapies given by one near my home and would recommend that you investigate.
As Ruth says, we are all different and I hope hearing of my experience helps, remember life is full of challenges to be overcome and this is no different. Onwards and upwards in the New Year, all the best.
Harley
Dear Sue
I hope once you get all the feedback from us you can put it all aside for a few days and enjoy Christmas with your loved ones.
Everyone is different. I had the same op as Bosue. I was nervous but was distracted by observing what they can now do in surgery, by the complex teamwork and management of the hospital ward, and by chatting with fellow patients. I only had one stitch and it looked like a spiral binder going from tummy button to the pelvic bone. The GP nurse took it out weeks later and it's healed brilliantly.
Just a couple of hours after the op I was able to sit beside the bed to have a wash with the help of 2 nurses and the next day I had a shower which made me feel 'normal' again. Some ladies in the ward felt a poorly for a couple of days but they were given lots of support by the nurses and it's not a competition so you must just do what your body tells you to.
I felt better for having the morphine device taken off so I could get dressed on Day 2. I took in a generously sized pair of soft trousers to wear in the day but needed a LOT of bed rest and sleep. I found the main discomfort was wind due to the gas they use in the op. It just wouldn't go away and was especially bad at 2 in the morning. One night nurse gave me hot peppermint drinks and that really did help. She also told me the only way to get rid of post-op wind is to walk. She was absolutely right. On Day 3 I took myself off to the canteen and had a chicken jalfrezi. The walk did no end of good getting rid of ALL the wind and I felt much more comfortable after that.
Day 4 I got home. I still needed a LOT of rest and absolutely no lifting at all - not even a kettle. My husband bought me one that didn't need to be lifted up - just press the button for hot water and we kept this by the bed so I could make tea for myself. Could be a useful Christmas present for you? I'm a social animal so was thrilled to have visits from friends and colleagues in the early convalescing days which made the time pass very quickly and I also did a LOT of sleeping. I was surprised to have quite a bit of discomfort post-op for several hours a day as waste passed through the intestines and bowel but got a fast-acting strong pain-killer for that from my GP. It lasted a few weeks - but got less and less day by day. I find it helps to know the cause of pain. Apparently the intestines don't like being disturbed so the pain is just because they're still sore and bruised from the op. How they get them all back in remains a mystery to me.
I didn't drive for 6 weeks but felt ready to drive and get back on my bike long before that. It's vital to adhere to the advice re exercise, lifting, driving, etc. I stuck to gentle walks, increasing the length each day. Once you're feeling stronger walking really is the best remedy as it has the right movement to strengthen the abdominal muscles.
I don't suppose you'll even feel like sex for 6 weeks. You can buy KY Jelly over the counter at the chemist which solves the problem of dryness. I went through the menopause some 18 months before my diagnosis but post-op reverted to having hot flushes at night. These went away after a few months.
Why is it a good idea to have the op? Well I was rolling round on the floor in agony before it so the relief afterwards was immense. Also I looked better afterwards than I had for years. It will take away the worse of the tumours and give you a fighting chance to tackle anything left with the lovely dose of chemotherapy that follows. Eight months along the line from you the tumours on my lymphs have disappeared along with the masses removed by the op. It's well worth doing. I know for sure it's given me quality time that I would not otherwise have enjoyed.
I do wish you well. It's horrible and terrifying if you fear being in hospital or having surgery. I can only say that all the nurses, the doctors, cleaners and catering staff were wonderful to us. I met some lovely people in hospital - staff and fellow patients and I my clearest memory of the experience was the wonderful supportive community we created for ourselves.
I had a hysterectomy in July this year. I was stage 3c, so it was everything removed. I was encouraged to walk as soon as possible, on the first day I had a visit from the hospital physiotherapist to help me get moving. Like everyone else wind was a problem, but I was told this was a good sign as it showed my bowels were working. I had a drip with pain relief with a button so I could regulate it myself, they got the pain relief team to see me to get the dose correct, so there was no problems.
I couldn't lift things for 6 to 8 weeks, so my husband bought a small travel kettle (like you get in hotel bedrooms) which only holds 1 mug of water so I could manage it.
I had 3 chemos, a 4 week gap the the op, followed by a 3 week gap and 3 chemos. I gathered this was the minimum times between everything to allow the body to recover it's strength, and to heal after the op
On the driving concern, I was told 6 to 8 weeks too. I saw my GP around then, she told me that when I feel I could stamp on the breaks in an emergency without hesitating or worrying about hurting myself, then I was ready to drive! The same for sex, when you feel ready talk to your GP. We were told to use condoms for 4 weeks after chemo, I presume this depends on yor chemo.
Overall, I would suggest if you can't speak to you consultant, talk to your GP, ours is brilliant and really easy to talk to, we have 3 lady GPs at our surgery which makes it even better. I am now feeling better than I have done in well over a year, so I hope you do too.
All the best, and try to enjoy Christmas. It is normal to fear operations and hospitals, I think we all do, whether we admit it or not!( I certainly do, though I've now got over my fear of injections!)
Cant add anymore to all the good advice you've already been given above. Just wanted to say good luck, have faith in your medical team to know what's best for you, enjoy Christmas and look forward to a speedy recovery from your operation. All good wishes. Meryl XXXXXX
It`s always a good idea to prepare yourself for major surgery, try to have as much rest and TLC before the op. If your body is well rested it will recover more quickly.
Prepare your bedroom so it is as comforatable as possible when you come out of hospital.
Treat yourself to new nighty, dressing gown and slippers - (cotton of possible, you stay fresher in natural materials), so you feel pampered.
In your hospital kit bag, pack, clean nightclothes that will be comfortable. No PJ`s because the elastic waist might cut across the scar and it tends to be quite warm in hospital so a thinner dressing gown is better than one that is too thick, if you get over heated you may feel giddy or faint.
If you know which way your scar will be, you can also select carefully planned pants, so they miss the scar. Mine was vertical.
Take plenty of wet wipes so you can freshen up without having to move very much in your hospital bed. And lip balm and face/hand moisturizers as the art in hospitals do tend to dry out your lips and skin.
I went in for a laporoscopy and had major sugery without any warning, my consultant/surgeon phoned my husband on his cell phone for consent. I was not prepared at all and stayed in the hospital nighty the whole time. So, these are the things I missed the most.
I also had part of my bowel removed, omentrum and appendix.
I had my operation on the Friday morning and came home on the Monday night, but was prepared to stay the full 5 days. I was allowed home simply because I was not getting much rest in hoispital as the ladies ward I should have been on was on a cleaning shut down and I was on a sergical ward.
They moved a lady with mental health problems opposite me and she drove me nuts - I couldn`t get home quick enough but only for that reason. Stay for as long as they will have you if you are comfortable and well looked after, in hospital you don`t have all the things to worry about like you do at home,especially if your man isn`t so hot on domestic skills.
Another idea if you are well enough to cook, double up on the quantity and freeze some ready meals. I always keep my freezer well stocked with things like, Shepherds pie, lasagna, curries, chillies and anything else that freezes well. I even batch bake my own yorkshire puddings and roast potatoes but you can buy these frozen anyway.
When you come round from the anesthetic you don`t need to be in pain, you will be rigged up to a morphine pump and you will be in control of pressing it as and when you need it, you cannot over dose on this.
You may have a cvitor fitted so you won`t need to worry about having a pee either.
I had no stitches or clips, in theory I was super glued together with liquid skin over the scar. I had the neatest scar you ever did see. But when I came home I developed an infection and the scar wasn`t so neat anymore. The district nurses came twice a day to change the dressing and I had three lots of anti-biotics.
I was allergic to most of the dressings which drove me mad but we got there in the end. I started my first cycle of chemo 5 weeks after surgery, the delay was the infection. I had 6 cycles of chemo both carboplatin and patlictaxal.
I was able to drive 6 weeks after surgery which is pretty much standard I think.
You need this operation to give you the best prognosis.
SEX after this type of surgary is a bit like after having a baby. There is never a time scale on this, its really an individual thing, when you are ready, it is time.
It may be a good idea to get some KY Jelly in in case you find you are not lubricated as well as you normally are. I didn`t feel as though I needed it, but I could only seem to take so much and the virgina walls felt tight and narrow as though they would split ( a little bit like the feeling of giving birth but not so bad). it felt as though I had been stitched up on the inside and my stitches would burst any second through deeper penetration, so my husband had to stop, we tried several times, each time we took things slowly and gently and each time it got better, then I bought some KY Jelly and that helped a lot. Also you may find changing your sexual persition may help. I also think that we must tense ourselves out of a bit of fear but really there is nno reason why sex should cause any damage.
8 weeks ago my daughter had her 1st baby by C section, she had what they call the bikin line cut (not that that should really make any difference to having sex), She described sex in exactly the same way as I did/have done here. Its a bit like hubby is ringing your door bell but he ain`t coming in, LOL!!!! It will get better over a period of time but you might find your libido is lower after this operation, if this is the case chat to your oncologist about it after the surgery but try not to rush things.
if its any consulation my GP put both myself and husband on one 10mg tablet of citalopram a day, this is a mild dose anti-depressant, cancer is a massive trauma you and your family will be going through and these do help you cope and deal with your diagnosis and treatment, they just take enough edge off to make things easier. They also lower ones libido so if hubby isn`t interested then it also takes the preasure off you trying to rush things for his sake. So they are helpful in that way as well.
Never be afraid to ask anything at all that is on your mind, we only learn by asking.
Some cancer patients don`t want to know very much this is why oncologists and GP`s or specialist nurses including macmillon don`t tend to tell us a lot. What is one persons relief, is another persons poison. I am one of these people who wants to know and understand as much as possible, it prevents me from lying awake thinking about it too much. How ever bad the answer I want to know so I can prepare the best way I know how, this way I can choose the best options available to me. False hopes can destroy you if they don`t pan out the way you expected them to. There is a fine line between being positive and facing up to reality. I also found it helped me to talk openly to friends and family. Also you don`t have to be brave, its ok to cry and scream if thats how you feel.
I found that talking about it helped others because if we are not open about it, loved ones or just people in general don`t know quite what to say or how to be around us. The amount of people who said they felt better to have either seen me or chat to me over the phone, if people ask, be honest tell them.
And now you have found us, we are also around to listen, you may vent all you like to us because we understand what you are going through and more often than not how you feel.
We won`t let you have a nervous break down sweetheart we share too much with each other, it combatts isolation, you will never feel like you are the only person in the world going through this on here. I only found the site recently myself and I had my diagnosis in October last year 2010.
Hope we have helped you feel calmer - take good care of yourself, rest plenty as and when your body tells you, give yourself to blob all day if thats what you feel like doing, accept as much help as possible with anything at all.
Thank you so much to everyone who took the time to answer my unfeasibly long list of questions. This is all very helpful.
I'm going to try and put this out of my mind now and relax with my family. I'm hoping to reach a point where I don't blub every time I hear the Military Wives song!
I hope everyone has the opportunity to have a lovely Christmas and New Year.
I have nothing to add to what the other ladies have said so well. We all got through this and so will you.But it is so normal to be scared , especially with the trauma of the diagnosis and the chemo.
I had a borderline tumour removed, with all my other female bits in january 2010 and then most of the incision was re-opened to check for the source of ongoing pain 5 months later. The first operation was absolutely fine , I was up and about within 24 hours . For sure I had pain but this was well controlled.I loved the time off at home. Longer term it has had no effect whatsoever on our sex life . I was allowed HRT but views are mixed about it.
Because my cancer was borderline I didn't need chemo or radiotherapy. Now 2 years on I really do feel much better, I've been away with my hubby on a diving holiday to Indonesia to celebrate our birthdays. It has changed our lives of course but for the better in many ways.
Try to be very easy on yourself , have as many little treats as you can and spend as much time as you can with other people. If the anxiety gets too much please do not rule out short-term medication.Waiting for the operation is the worst time, honestly.
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